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Re: Rate of Ferritin Decline

Posted: Sat Jul 01, 2017 2:12 pm
by fuz_mind
peanut1 wrote:Thank you! I have a lot of hope for managing these symptoms better IF I can get the transfusion.


keep fingers crossed!

Re: Rate of Ferritin Decline

Posted: Thu Aug 17, 2017 4:58 pm
by fuz_mind
update from my original post

im stuck in no man's land now with all my iron indices on borderline low

Aug test results

ferritin - 121
tibc - 304
fasting serum- 55.8
iron saturation - 20%

my symptoms have been worsening although my doc attributes that to me cutting my requip to 1mg
doc offered me iv iron if i want to - just wanting some opinions on what you thought abt the numbers

Re: Rate of Ferritin Decline

Posted: Fri Aug 18, 2017 3:44 pm
by stjohnh
Hmmm... by usual measures your iron saturation is low. This indicates that while your ferritin ordinarily would be considered okay, it is likely artificially elevated. Likely that means that your ferritin is definitely on the low side for somebody with RLS. If you haven't had any iron infusions, perhaps you can get one. Different Laboratories do use different normal ranges for these numbers so it would be helpful if you would post what the normal ranges for these used by the laboratory that did the analysis.

Re: Rate of Ferritin Decline

Posted: Sat Aug 19, 2017 2:50 pm
by fuz_mind
stjohnh wrote:Hmmm... by usual measures your iron saturation is low. This indicates that while your ferritin ordinarily would be considered okay, it is likely artificially elevated. Likely that means that your ferritin is definitely on the low side for somebody with RLS. If you haven't had any iron infusions, perhaps you can get one. Different Laboratories do use different normal ranges for these numbers so it would be helpful if you would post what the normal ranges for these used by the laboratory that did the analysis.



Hi stjohn

thanks for the opinion! I had an Iv iron done April 2016 when ferritin was about 50 (after 3 months of oral iron) and am supposed to meet with my doc soon to decide if I want another IV or to go with oral iron. my doc is ok to trial IV iron again on condition that if my symptoms don't improve then he would like me to increase my ropinirole. But the numbers are "technically" borderline lowish so I guess we are in no man's land....hence the hunting around for some thoughts/opinions from others :)

the numbers from the lab r as follows;lab ranges in parenthesis

Iron 10 (10-30 umol/L)
Transferrin 2 (1.9-3.8g/L)
Iron Saturation 20 (15-45%)
Ferritin 121 (12-307 ug/L)

Re: Rate of Ferritin Decline

Posted: Sat Aug 19, 2017 2:57 pm
by stjohnh
Well, for most people getting their iron level up with oral iron is at least a time-consuming and sometimes difficult due to stomach problems. Most people on these boards that want to have an IV iron Infusion have difficulty persuading their doctor to do it. Seeing as how your doctor seems agreeable, I think under the circumstances I would request the IV Iron Infusion.

Re: Rate of Ferritin Decline

Posted: Sun Aug 20, 2017 9:37 am
by fuz_mind
stjohnh wrote:Well, for most people getting their iron level up with oral iron is at least a time-consuming and sometimes difficult due to stomach problems. Most people on these boards that want to have an IV iron Infusion have difficulty persuading their doctor to do it. Seeing as how your doctor seems agreeable, I think under the circumstances I would request the IV Iron Infusion.



thanks for the advice! :)

Re: Rate of Ferritin Decline

Posted: Sat Nov 11, 2017 12:13 pm
by fuz_mind
peanut1 wrote:Thank you! I have a lot of hope for managing these symptoms better IF I can get the transfusion.


peanut1: did you get your infusion eventually? I hope you did because I had a positive experience with mine when I did it.

I am now 3 weeks into my 2nd infusion and I didn't remember having such a dramatic effect from my 1st. But within 3 weeks the physical fatigue that has been bugging me for the last 6 months, with Aug - Sept being the worst, I'm no longer tired. My RLS symptoms has reduced signficantly - I no longer experience pain, although the discomfort is present. I still fidget (which is a problem for work). But the lack of pain and improvement in energy levels has been quite amazing. Unfortunately, it didn't help very much with sleep, so my doc is pushing for me to restart ropinirole at 0.25mg, which I have caved in because I need to return to work soon.... although ideally I would prefer to wait it out for 6 weeks.

Re: Rate of Ferritin Decline

Posted: Sat Nov 11, 2017 12:22 pm
by fuz_mind
stjohnh wrote:Hmmm... by usual measures your iron saturation is low. This indicates that while your ferritin ordinarily would be considered okay, it is likely artificially elevated. Likely that means that your ferritin is definitely on the low side for somebody with RLS. If you haven't had any iron infusions, perhaps you can get one. Different Laboratories do use different normal ranges for these numbers so it would be helpful if you would post what the normal ranges for these used by the laboratory that did the analysis.



Hi stjohn,

I'm going to need an opinion on the iron again. I did take up the IV iron by using the low iron saturation to push for it. my doc was slightly hesistant initially about the IV iron because the ferritin is > 100

i have a problem though that might need advice from you or others on the forum - my neuro is now refusing to measure the iron saturation, as advised by the hatemalogist because my blood is prone to being lysed. He is only going to measure ferritin and ESR from now on. But I am feeling much better after the IV iron - both in terms of the symptoms and the fatigue, but the feritin was at 111 before the IV iron and the hatemalogist insisted that my feritin was not artifically elevated because the ESR was within the normal range.

I'm now rather concerned that perhaps I do need the ferritin at a slightly higher level but neuro might refuse to give me one as long as ferritin > 100.

are there any other iron indices that will be helpful other than ferritin? or am I just stuck given that they are not going to measure the low iron saturation

Re: Rate of Ferritin Decline

Posted: Sun Nov 12, 2017 2:51 am
by stjohnh
fuz_mind wrote:

Hi stjohn,


are there any other iron indices that will be helpful other than ferritin? or am I just stuck given that they are not going to measure the low iron saturation


There are several tests of iron status, however the real problem is not so much the tests that are available, but that the relationship between various iron measures and RLS symptoms is unknown except for ferritin, and even then serum ferritin doesn't correlate terribly well with RLS symptoms. The iron problem that RLS patients have is poorly understood and the serum ferritin, which is the usual measure, is not well correlated with iron levels in the brain. On this forum we ordinarily say that a ferritin needs to be over a hundred for a person to have an adequate ferritin level as far as RLS is concerned, however it is known that some people require ferritin levels significantly higher than that to get relief. Additionally, many don't get any relief from extra iron no matter what their ferritin is. The reason for that is unknown (at least to me).

Re: Rate of Ferritin Decline

Posted: Sun Nov 12, 2017 8:56 pm
by ViewsAskew
stjohnh wrote:
fuz_mind wrote:

Hi stjohn,


are there any other iron indices that will be helpful other than ferritin? or am I just stuck given that they are not going to measure the low iron saturation


There are several tests of iron status, however the real problem is not so much the tests that are available, but that the relationship between various iron measures and RLS symptoms is unknown except for ferritin, and even then serum ferritin doesn't correlate terribly well with RLS symptoms. The iron problem that RLS patients have is poorly understood and the serum ferritin, which is the usual measure, is not well correlated with iron levels in the brain. On this forum we ordinarily say that a ferritin needs to be over a hundred for a person to have an adequate ferritin level as far as RLS is concerned, however it is known that some people require ferritin levels significantly higher than that to get relief. Additionally, many don't get any relief from extra iron no matter what their ferritin is. The reason for that is unknown (at least to me).


Indeed! I need mine closer to 200. And some people get to 300 and still have no relief. One reason may be a missing protein - Steve has written about that - he does not have it. But even with that, there is still a lot of variability.

Re: Rate of Ferritin Decline

Posted: Tue Nov 14, 2017 12:32 pm
by fuz_mind
ViewsAskew wrote:
fuz_mind wrote:


Indeed! I need mine closer to 200. And some people get to 300 and still have no relief. One reason may be a missing protein - Steve has written about that - he does not have it. But even with that, there is still a lot of variability.



Thanks Ann! I just saw my neurologist who saw the improvement after the IV iron so he does agree that maybe I need it at a higher level than 100. He is finally convinced now after reading all the articles I sent him! He apparently showed my iron test results to a number of hatemalogist who just said my iron blood test results dont make sense!

he finally made reference to the little blue book for the first time! :D

Re: Rate of Ferritin Decline

Posted: Wed Nov 15, 2017 4:57 am
by ViewsAskew
fuz_mind wrote:
ViewsAskew wrote:
fuz_mind wrote:


Indeed! I need mine closer to 200. And some people get to 300 and still have no relief. One reason may be a missing protein - Steve has written about that - he does not have it. But even with that, there is still a lot of variability.



Thanks Ann! I just saw my neurologist who saw the improvement after the IV iron so he does agree that maybe I need it at a higher level than 100. He is finally convinced now after reading all the articles I sent him! He apparently showed my iron test results to a number of hatemalogist who just said my iron blood test results dont make sense!

he finally made reference to the little blue book for the first time! :D


YAY!!!!!

Re: Rate of Ferritin Decline

Posted: Fri Nov 17, 2017 1:24 pm
by fuz_mind
ViewsAskew wrote:
fuz_mind wrote:
ViewsAskew wrote:Indeed! I need mine closer to 200. And some people get to 300 and still have no relief. One reason may be a missing protein - Steve has written about that - he does not have it. But even with that, there is still a lot of variability.



Thanks Ann! I just saw my neurologist who saw the improvement after the IV iron so he does agree that maybe I need it at a higher level than 100. He is finally convinced now after reading all the articles I sent him! He apparently showed my iron test results to a number of hatemalogist who just said my iron blood test results dont make sense!

he finally made reference to the little blue book for the first time! :D


YAY!!!!!


really feels like a victory! :D :D :D

FINALLY! :)

Re: Rate of Ferritin Decline

Posted: Sat Jun 23, 2018 5:09 pm
by Bronwen
file:///C:/Users/user/Documents/Health%20-%20RLS%20-%20Iron%20-%20Consensus%20on%20Teatment.pdf

Here is the Consensus Paper on iron and iron infusion.

It makes clear that the sort of infusion you have, for example, Iron Sucrose versus Ferric Carboxymaltose, will make a big difference to eventual uptake in the brain.
Repeat infusions are considered when symptoms worsen and when serum ferritin levels drop below a certain level, quite a high level it seems.
That will be different for each patient and each infusion type.
So, no hard and fast rule.
But you certainly see your doc when everything goes pear-shaped and you're plastered on the kitchen ceiling at two in the morning.

Re: Rate of Ferritin Decline

Posted: Sat Jun 23, 2018 9:07 pm
by ViewsAskew
Bronwen wrote:file:///C:/Users/user/Documents/Health%20-%20RLS%20-%20Iron%20-%20Consensus%20on%20Teatment.pdf

So, no hard and fast rule.
But you certainly see your doc when everything goes pear-shaped and you're plastered on the kitchen ceiling at two in the morning.


Indeed!